I’m going to bet that you’ve never heard the term “Hormonally Triggered Mood Disorder” mentioned by your doctor. But yes it is really a thing, the problem is that it’s not an actual “diagnosis”. You may know that I believe that too many women’s health issues are being painted with a mental health brush. The problem with this is that we aren’t getting to the root cause.

There is good news. Dr. Jennifer Payne, M.D. and Psychiatrist Karen Swartz, M.D. created the Women’s Mood Disorders Center at John Hopkins Hospital to study hormonally triggered mood disorders and provide expert evaluation of women who suffer with such symptoms. Though they are located in Baltimore, Maryland they will see Patients across the USA as well as International Patients! Great News!

What is a Hormonally Triggered Mood Disorder?

Perinatal Mood Disorders are one of many hormonally triggered mood disorders that are treated at the Women’s Mood Disorders Center, others are premenstrual dysphoria disorder (PMDD), perimenopause & menopause-related depression, and major depression or bipolar disorder — which are both marked by gender differences.

Dr. Jennifer Payne is the first doctor I’ve heard quoted as saying this which is something I have believed for years:

“I believe there’s a distinct group of women with unusual sensitivity to normal hormone fluctuations,” Dr. Payne says. “And their problems aren’t tied to actual hormone levels so much as to changes in those hormone levels.”

Source: John Hopkins

That statement certainly fits me. And I am not alone. I often hear from women who say they are told their labs are in the “normal range” but they don’t feel right. Could it be that maybe it’s being looked at all wrong?

After 15 years of research, I absolutely believe too many women are being denied the proper help because our medical system relies on “normal ranges”~Sonya

Thank you Dr. Jennifer Payne! Now can we get you to shout it from the rooftops?!

“Mood disorders in women are understudied, to put it mildly,” says Dr. Payne and she cites the desperate need for more research.

One of the problems is that it takes 17 years on average for research findings to “find” their way into clinical practice. Yup…by then your reproductive years are long gone. Which is why I say do your research and advocate for yourself. But research is necessary and I’m excited about the future of research in this area.

Participate in Dr. Payne’s Pregnancy & Postpartum Research:

Perinatal Mood Disorders need more of the type of research Dr. Payne is involved in. I wish I had been able to participate in a study and if you feel the same here’s information on the research she is doing – check it out:

The John Hopkins Women’s Mood Disorders Center evaluates and treats women with mood disorders, with a special emphasis on the treatment of hormonally-triggered mood disorders such as premenstrual, postpartum, and perimenopausal mood disorders. The center offers:

The information provided on this site is not intended as medical advice – seek medical advice from a doctor. If you take medication never stop taking them without the supervision of your doctor. Postpartum Psychosis is a medical emergency if you or someone you know is suffering seek medical attention immediately – call 9-1-1.

I do a lot of research about Postpartum Mood Disorder and talk to a lot of women and, of course, any “expert” that will talk with me about it. As a result of my experience, I have a lot of my own theories, thoughts, and opinions about Postpartum Depression.

Someone recently asked me what kind of “Awareness” I would hope to see spread to the point that everyone you could meet would know. That’s a tough question because there’s so much to talk about but I think because there’s lots of other things happening in terms of awareness one of the biggest for me is to let women know this:

Postpartum Depression (PPD) is Not One Disorder

For a long time, I’d noticed that Postpartum Depression is talked about as if it’s “one disorder”. In fact, Postpartum Depression is the common term used as if it’s expected that women will recognize that symptoms such as OCD, Anxiety, Panic, BiPolar, Psychosis and Post Traumatic Stress Disorder are a part of it. I had trouble finding any information about postpartum anxiety and it’s still often buried at the bottom of long lists of symptoms of PPD. Women are falling through the cracks because of it. People need to know – Postpartum (and in fact, Perinatal Mood Disorders) are actually a group of disorders:

ANXIETY ~ OCD ~ BIPOLAR ~ DEPRESSION ~ PSYCHOSIS ~ PANIC

~POST TRAUMATIC STRESS DISORDER~

Perinatal Mood Disorders are

under-diagnosed and under-treated

yet remain

the most common complication of pregnancy.

Postpartum Psychosis is a medical emergency – if you or someone you know is suffering call 9-1-1

If you need immediate help, please call the National Suicide Hotline at 1-800-273-TALK (8255)

If you are looking for local pregnancy or postpartum support and resources in your area, please call or email:

Postpartum Support International

1-800-944-4PPD (4773)

Warmline (English & Spanish)

support@postpartum.net

I am so excited to be able to share this with you! It isn’t every day I get called a Diva let alone by someone I have so much respect for – PCOS Diva, Amy Medling! Amy is a Certified Health Coach, Women’s Health Advocate and the Founder of PCOS Diva. She is a woman who transformed her life by becoming an empowered patient. She is passionate about helping other women transform their lives and find their own path to better health while living with PCOS.

Amy interviewed me about the Personalized PCOS Program that I am creating as Founder of Open Source Health Inc. and our myAva platform. I’m excited to share my vision for the future of women’s health. It is this vision that has enabled me to be able to bring together the most incredible experts to help in the creation of a brand new type of healthcare program and we are starting with PCOS. My team includes a collaboration of physicians, scientists, policy advisors and of course, women with PCOS.

If you’d like to hear more about the Personalized PCOS Program grab a cup of tea or coffee (it’s a 30 minute interview) and have a listen.

Send me questions or comments or if you’d like to stay informed as we launch the program sign up to receive updates at myava.com. I’d love to hear from you.

My poor neglected baby – Hormone Soup! It is probably hard for you to believe that my blog is one of the true loves of my life! Talking out in the open about hormones has led to so many amazing experiences for me. Including leading me to another of the loves of my life – working on disrupting women’s health from the patient side of things! I truly believe the only way we can make the changes we want to see in women’s health is to create it ourselves. So even though it seems like I’ve pushed my beloved Hormone Soup to the side, it’s been for a good cause.

I’ve been working on the most exciting project I’ve ever been involved in – something I think you will really like to hear about. Through my blogging efforts I’ve learned so much about women’s health, especially of course hormone, sexual and reproductive health but also delved into the latest innovations happening in healthcare like precision medicine or personalized medicine.

I bet you’ve heard of Precision Medicine? President Obama and other government leaders around the world have shone the spotlight on Precision Medicine (also referred to as Personalized Medicine). But my guess is you don’t really have a good understanding yet of what it is and how it is going to affect your life. You aren’t alone – even the experts are still trying to figure that out! Unlocking your DNA holds big promises but the focus has largely been on cancer and maybe you’ve heard of MTHFR mutation but there’s just so much more.

Would you like a molecular picture of yourself instead of constantly fighting for just one little TSH or hormone test? What about hundreds of markers that you have access to and can share your data with whomever you want? Now that’s what I’m talking about.

The potential benefits are huge and I really believe will lead to improved outcomes and experiences over time.

There is good news and bad news. The good news is that we are finally able to access all sorts of valuable information in your blood and urine and vagina and poo! The not so great news is that in just over a few years of analyzing that much information contained in one person we are going to need a place to store it all and it’s going to amount to 1Terabyte of data for each of us! If you can’t imagine 1TB of data here’s help:

50,000 trees made into paper would be needed to print out all that data!

250 million pages printed both sides, over 10 miles high!

250,000 MP3s which is about 2 years of non-stop listening!

Some people are really excited about it and even though it might sound boring and that it doesn’t relate to you I am here to tell you it does relate to you and it is all actually quite exciting. We are finally at a stage where it is possible to store and analyze this much data. And the clincher is what do we do with it? Well that’s the best part as far as I’m concerned. We can use it to inform care in terms of prevention, diagnosis and treatment. But also being at the forefront of this kind of medicine means that as new research gets published you’re the first to benefit.

So I used to wonder why no one is really doing this yet because there are a lot of people out there who know a lot more than I do and are probably more qualified. But I’ve discovered a couple reasons – this is damn hard, it takes a lot of money and a ton of guts. Another reason is that it takes a lot of collaboration with a lot of smart people to put a medical program like this together because no one has all the pieces. In my experience not many people can see the whole picture either. Over the years I have met experts who hold one super important piece of the puzzle and then there are those who know a ton about all this great science and stuff but not a damn thing about women’s health. And there’s the women’s health experts who don’t know about all the science and innovations that we could tap into. And the doctors, well in many ways even the doctors that want to innovate have their hands tied or are so busy taking care of patients there’s no way they can get all of this figured out. One day I realized this put me in a really unique position, by listening to the discussions in all of these areas over the past 2 years or so I’ve really learned where the gaps are and figured out a way to close the gap. I’ve developed an incredible network of healthcare providers, research scientists, technologists and patients that are as passionate as I am about disrupting healthcare with the latest innovations and I’m setting out to do all that and I’m getting started with the most underserved of all women’s hormone health issues – Polycystic Ovary Syndrome (PCOS).

I have so much more to tell you but I will save it for another day. If you’re interested in learning more head on over to myava.com and let me know you’ll like to stay in touch. Or drop me a line here at Hormone Soup.

If you have PCOS definitely reach out and I’ll let you know when we’re launching the program in your area.

I am sure some of you saw the results of this study into Maternal PCOS and risk of Autism. Well if you haven’t, for the first time, researchers have identified a link between a mom with polycystic ovary syndrome (PCOS) and increased risk of having a child with autism. I have been noticing the reaction of women to this new research throughout the day and I saw a variety of reactions – some women were commenting and blaming themselves for a child born with autism, some people pathetically used it to give a voice to the vaccine/autism debate, some women with autism and aspergers were saying ‘what’s wrong with being like us’, some women with PCOS who have had children were sharing their pregnancy outcomes in terms of whether they had children with or without autism.

My first reaction was that I wanted to give every woman with PCOS a hug today. My heart sank for women with PCOS, imagine feeling like now you have one more issue to deal with, one more burden among a sea of health symptoms related to your health condition. Looking for the positive I began to think we have to find the silver lining in this piece of “bad news” and it’s this: FINALLY people everywhere are taking notice of a chronic, lifelong disorder that has not been given the attention it deserves and has no cure.

I work in healthcare and every single time I bring up Polycystic Ovary Syndrome I am in awe – almost no one has heard of it – maybe now they will.

almost no one has heard of it – maybe now they will

It’s the number one cause of infertility and people haven’t heard of it. It’s the number one endocrine disorder among women of reproductive age and people haven’t heard of it. It causes diabetes in 50% of the women who suffer and yet we haven’t heard of it.

Clearly awareness campaigns are a must even among the medical community. When I was at a PCOS Challenge Symposium in September I overheard two women discussing PCOS and one said when she sees a new doctor and she tells him/her that she has PCOS it’s like “they’re hearing about it for the first time”.

“There isn’t a women’s health group that is more medically underserved than the PCOS Community.”

And this syndrome has so much confusion going on in the medical community – there are several different diagnostic criteria to choose from depending upon which side of the debate you sit on. It’s so bad that one doctor/researcher at the same symposium said when they (doctors/researchers) discuss how to diagnose this syndrome – “it’s the person with the loudest voice” who usually wins the debate and gets his way! Every doctor on the panel mentioned in one way or another that the current state of affairs in the medical community for PCOS is pathetic, pitiful, heartbreaking.

I follow a LOT of women’s health topics and I can safely say there isn’t a women’s health group that is more medically underserved than this community of patients. The women who suffer from PCOS deserve MORE – better diagnosis, better care, more treatment options instead of just bandaid solutions and more awareness. It’s time to DEMAND more.

So let’s keep a positive outlook – the time for PCOS patients to get heard is now. It is my sincere hope that this brings to light a health issue that affects up to 10% of women.

Today is Pregnancy and Infant Loss Awareness Dayaround the world. There are lightings and other events planned around the world to recognize and bring awareness to a painful topic that so many people remain silent about.

I will be lighting 2 candles tonight in memory of my lost babies. My babies were lost due to unaddressed hormone issues. I believe silence makes the hurt worse. At the time of my losses I didn’t have anyone to talk to that understood what I was going through.

If you’re in Toronto the CN Tower will be lit up pink and blue and purple at 8 pm EST. You can check here for other Canadian city events at www.october15.ca

If you’ve lost a baby in pregnancy or infancy and you’d like to find support resources, whether in Canada or elsewhere – here’s a great list to get you started:

Hugs and Love to everyone who’s experienced this loss,

Sonya

If you grew up in the 70’s this is a must watch retro video – I must have seen this or something like it during my sex ed class in the 70’s. Notice it’s produced by J&J?!

Here are the highlights:

Let me just say “Pad” technology has come a long way! Next time you go shopping down an entire aisle of menstrual supplies, be grateful! Gotta give a shout out to the people who develop new products for us. Seriously special panties with elastics, belts and the minipads of the 70’s look like today’s maxipads.

I swear to God I have never ever heard of a woman skipping her period because she had a cold! I am absolutely certain if that were the case half of us would be sneezing all over each other.

Love the exercise suggestions to get rid of cramps. Wow…no cramp I ever had could be remedied with a wall pushup or a sit-up.

I follow a lot of discussion around menstruation including global cultural difference, individual differences in how women react to having their period and how it is talked about or not talked about within families and whether we react to our period differently over our lifespans. I think it’s fascinating and everyone’s situation is so unique.

I had the lucky chance to go to Atlanta, Georgia this weekend to check out the PCOS Symposium put on by PCOS Challenge. For me it was phenomenal for so many reasons – the best of course is that I got to meet one of my all-time favorite patient advocates and a true hero in my eyes – Sasha Ottey!

Thanks to the internet and social media, we live in an age where we can make friends with people all over the world and yet never meet them. This weekend I finally got to meet my kindred spirit – Sasha!

Sasha is a one-woman powerhouse – bringing awareness to one of the most misunderstood women’s health issues – Polycystic Ovary Syndrome (PCOS). PCOS is the leading endocrine disorder among reproductive women and the number one cause of infertility. This life-long syndrome 10 – 15% of women & girls (depending upon which diagnostic criteria is used). Having PCOS puts women at a severely high risk for diabetes and cardiovascular disease.

Here’s one of the saddest part of all: With all of the complexities, emotional and physical suffering in women and their families – PCOS receives less than 0.1% of NIH research funding.

I learned so much about PCOS at the Symposium and I think everyone else must have too – it was information overload! It impressed me that there were people who travelled far and wide to attend. Costa Rica, Calgary and all over the USA, husbands came with their wives, mothers with daughters and i even saw families there together! The experts that shared the latest research, the controversies and the different approaches to diagnosing and treating PCOS was simply phenomenal – everything from pharmaceuticals to genetics and hair removal and everything in between! If you can manage to make it to one of these PCOS Symposia I would highly recommend it. And please, please help spread PCOS awareness where ever you go, wherever you can – I guarantee women with PCOS will appreciate it.

#pcos #pcosawareness #pcoschallenge

Meet Sonya, the Founder of Hormone Soup

I began advocating for myself after spending years seeking answers to my Infertility, Miscarriages, PMS, Postpartum Mood Disorder and Hypothyroidism. I grew increasingly dissatisfied by the band-aid solutions being offered and began searching for better answers to my healthcare concerns.

An amazing thing happened when I opened up about my story, the more I shared my struggles with other women, the less alone I felt. Over time I began hearing story after story and that's when I knew I had to do something. That's when Hormone Soup was born. I hope that by sharing my story and creating awareness into hormone health issues, other women will feel empowered and allow them to find answers sooner and more readily than I did.

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